The Last Minute Frenzies

         Today another Mom of a feisty one asked her facebook friends how they were today.  How we really were as opposed to just a "how you doing?" greeting like we Americans do. My answer took a minute.  It was, by the way, crazed, smelling of lavender oil and with glitter modge podge in my hair. I cannot complain too much. This is the best I have smelled all year. But the question did make me stop and try to catch my breath and take a look around.   It is absolutely nuts here right now. We have made about 2 dozen gifts in two days and have about a dozen more to go. As I type this we are waiting for the chocolate on our truffles to harden before we package them.  And there is now chocolate in my hair to go with the modge podge.  All over Feisty Pants' face, too, (She didn't want us to wash it off and "waste it")

            We have about ten days before Christmas but only about five to finish all our preparations before leaving for an out of town doctor's appointment and then my folks' place.   And then make it back in time for Hippie Pants and New Years and about a million more appointments.  Every time I turn around there's a gazillion more emails.  And something I have forgotten. And one more person I have forgotten to add to my gift or card list. And cards I have to mail out.  And a package or two to pop in the mail. And a few doctors I have to call and schedule or reschedule or remind they are supposed to be calling me over something or other.  And there has been some drama at school (not really involving us directly, but I HATE when adults act like children and children end up getting the short end of the stick. sigh...)

            So, you will have to forgive me if we are not as cheerful as we should be.  You'll have to be patient if we are cranky and out of sorts and totally unprepared this year.  Christmas will arrive. And we will muddle through. And probably actually have a great time.  And Feisty Pants is not sick. And we smell much better than we usually do.  And glitter and chocolate aren't even the worst things I have had in my hair THIS week. The frenzy will pass.  We will catch our breath.  If the worst thing I have to bitch about is a busy Christmas then I am blessed, indeed.  So if I don't get another post written beforehand, I hope you all also having a blessed and healthy Christmas.  I wish you peace.  Also I wish you plenty of chocolate truffles.  Here's the recipe, messy but easy peasy.  Enjoy!

Cookie Truffles- (we usually triple or quadruple but we have a Goo in our house)

1 package your favorite cookies (we use oreos but any will do)

1 8oz package cream cheese (softened)

1 bag chocolate chips

cinnamon, chili powder and/or sea salt to taste

Crush/chop/crumble cookies into mixing bowl.

Blend in Softened cream chese. Mix well .  

Roll into small balls place on cookie sheet (greased or lined w waxed paper or parchment)

Place in fridge/freezer to harden.

Melt chocolate chips in double boiler.  Roll cookie balls in chocolate to cover. Place back on lined cookie sheet.  Sprinkle with cinnamon or sea salt or chili powder (for the adventurous.) 

Eat with abandon.

On the Merry Go Round

              So, we are almost into the second week of December and Feisty Pants isn't sick.  Except maybe she is.  But she probably isn't. AHHHHH.  Let me explain. The weather has gotten warm again here in the Southern Tier of New York. (WTF UNIVERSE!?!? It's frigging DECEMBER.  How many snow dances do I have to do in the backyard?)  So it is now in the high 40's during the day. Warm enough to destroy my mood and create a ton of mildew.   So Feisty Pants is a tad on the goopy side. (Read that as snotty and sniffly)  BUT her sat rates are fantastic and she has no fever. But Feisty Pants seems slightly off somehow. But she is mostly fine.  BUT Goo and Hippie Pants have spent the weekend complaining they don't feel good.  Not really "sick"  sick, mind you.  Just cranky and achy and sniffly. And they have the chills and are both complaining of fatigue.   But no coughs or fever or nausea.  But Feisty Pants went to sleep yesterday at 6pm and slept all night until this morning at 7 am.  And is slightly cranky.  But she has no fever and her sat rates (a measure of oxygen in the blood) are fantastic.  But we are gonna sit around and stare at her and worry.  Which is just annoying her and making her cranky. (Are you sensing a theme here?)

                And this is my dilemma.  I have gotten pretty good at handling crises.  (Just plow through it, suck down coffee, fall apart later when you have the luxury of time)   I am good rolling with the ups and downs. (I am TOO.  I don't care what Goo tells you.)  I just am unsure on how to handle the little things.  It's probably nothing.  Either their allergies are just simply stressing out their bodies and making the three of them  a misery, ummm er, I mean miserable or it's a minor virus. (unless it is a curse but we haven't pissed off any wandering gypsy witches lately that I know of...)   So I guess we are just riding this out.  But after having lived through a lot of storms, I now jump at the sound of thunder as it were.

                 Feisty Pants is, at this very moment, bitching up a storm.  Everything is annoying her and her hair hurts.  And her toenails.  And her eyebrows.   But she has a severe scoliosis that causes her pain. And the cp causes fluctuating muscle tone which sometimes causes muscle cramps.  And EVERYONE in this house currently has a sinus headache. (We have given her tylenol, but it has not kicked in yet.) And she is twelve, so let's throw puberty and hormones into the grumpy mix because Goo and I need one more thing to try figure out.  But it's December and it's effing forty degrees out so she could very easily be brewing an infection right about now.   But her sat rates are good and she has no fever.  AHHHHH 

Thank-full

        Not that I am lazy or anything, honest.  But it has been forever since my last post.  But hey, holidays.  First Feisty Pants has been home for an eon now.  (Just ask her, she has been bored FOREVER now.) Actually since Tuesday, but that's a million years in bored preteen time. And, since we didn't go out this Thanksgiving (My first choice, but the universe did not want to play turkey ball with me) I ended up cooking for what seemed two centuries. All of which meant I fell behind on all the other crap I gotta deal with around this zoo (and the city frowns on burning dirty laundry instead of washing it, go figure) so I am behind here too.  Sorry if I let anybody down (I am just soo sure this is the highlight of your existence.  No, no, don't answer, I'll just take the sound of crickets as an affirmative.)

          Anywhoo, since it is Thanksgiving I thought perhaps I would list out some things I am thankful for. Really I should do this more often, but, in my defense I forget to do so. Plus apparently I am a slightly reprehensible human being who needs an occasional reminder to be grateful.  (I don't want to hear it, you guys sometimes suck too, I SEE your facebook posts... just saying...)

To that end:

 Thank you, Universe for the following:

1) The news that coffee can help you live longer.  (Have you seen that study?!? go look it up, I'll wait)  Holy Cannolis, I have never felt more like a highlander in my life.  We live on coffee. Cut me and I bleed starbucks.  If you see wild lightning coming from my kitchen, no worries. I have just slain Goo in ritual combat. There can be only one.

2) Jim Henson movies- I do not know what tv executive has decided to spring Jim Henson on us this Thanksgiving, but may the gods bless his fuzzy little heart.  The ONLY time Feisty Pants has not complained this last week is when she had the Macy's Parade, Labyrinth, a Muppet movie, and Turkey Hollow to keep her amazed. It's the only time I was able to get anything done around here. I may have to stalk and kidnap Kermit and the gang.

3) People in Binghamton named Rhonda. - seriously.  I never met anyone named Rhonda before I lived here.  Now, I have met three.  All have been in the medical profession (two nurses and an occupational therapist).  All are really good at their jobs.  And all three have remarkably been able to understand Feisty Pants' garbled speech and actually listened to her, much to her delight.  And their listening has made their care of her better, much to Goo's and my delight.

4)  It's finally starting to get cold.  Not cold enough for me (I am the one in my backyard doing a snow ritual) but cold enough at night to start killing mildew.  If this keeps up, we might make through the holidays intact. Santa could bring me the gift of no antibiotics.  That would truly be a holiday miracle.

 

How about you? What are you thankful for this delightful Holiday season?

 

Waiting Rooms

             Sigh... as I sit here, writing this, I am waiting for a taxi to take us to Syracuse for an ent appointment for Feisty Pants. A taxi that is now 30 minutes late. It takes an hour and half to get there. We have an appointment in an hour and 15 mins.  This kind of crap makes me crazy. I hate waiting. I especially hate waiting times that are thrust upon me. And.... it's finally here.

             So.  Now it's about four hours later.  Four hours, one very exciting cab ride (We actually got there just in the nick of time), a doctor's appointment and a long ride home later.   The doctor's appointment took all of ten minutes. The doctor never even actually touched FP or anything.  Not that it went badly.  We went for a consultation about Botox. Which we are going to get done.  In three weeks. Which is fab. They will botox her salivary glands and that will help to control her secretions and hopefully lead to less pneumonias.  (This has worked in the past.)  But this initial consult could have been done over the phone.  Or better yet, if the doc wanted to lay eyes on her via Skype.  Then we wouldn't have had to drive three hours for a ten minute meeting.  And Feisty Pants would not have cried all the way there. (Botox shots for CP and salivary problems are painful and she very clearly remembers getting them in the past.)  Most of all, we would not have had to watch Goo, whose nickname should be NeuroticallyPrompt Pants, seethe all the way there because he thought we were going to be late.

          To make matters even more fun here in Feisty Pants Land, we have another appointment that will go about the same way on Thursday.  FP is having her G-tube changed.  It's a REALLY simple procedure.  Painless and takes all of about a minute.  But the appointment takes FOREVER.  First we get to the hospital GI lab, full of grumpy older people who had to fast to be there and who do NOT want to watch cartoons and don't appreciate FP complaining nonstop that she does.  While I fill out about 30 minutes worth of paperwork.  Then a nurse has to go over every question I just answered like I am a spy being debriefed.  (What exactly is going on these labs I don't know about?!?)   THEN we go back to a procedure room where Feisty Pants finally gets to watch good stuff  but then Goo is now complaining about the wait and when can we go find coffee anyway.  Then the doc finally strolls in as if he has been waiting for us, takes approximately 90 seconds to do the tube change and strolls on outta there like he just dropped the mike.  While we wait for the discharge paperwork.

          Much like people who are not poor do not realize how expensive it is to be poor (poor people get charged more for EVERYTHING while being told it's their fault) extremely busy people find their lives consumed by stupid time wasters. I know we always seem like we are in a giant hurry.  That's because we are. We sleep in shifts and have to arrange everything around FP's eating and med schedule.  So if we seem a little manic it's because we are trying to get so much stuff done in very small windows of opportunity.  We are actually trying to be very patient with you.  So how about you all show a little love back and get off the stick, please?

Fickle

               Ahhh November.  You are such a fickle bitch.  First you come on all strong and wonderful.  You entice me with your dark chilly evenings that hint at snows to come.  You bring gorgeous starry moonlight nights unencumbered by loud, annoying people or worse, loud, annoying mosquitoes. You arrive with a mysterious barrenness and brisk winds that speak of winter and tell us it's time to batten down the hatches and remind us why we love our couches and spouses.  (Hint- they are both fuzzy and warm.) You smell like the earth has turned into one giant pumpkin spice latte.   And just when I am all infatuated with your dark mysterious looks and smoldering gazes with hints of frost, you drop a crap ton of leaves on my backyard, bring the temperature up into the 60's and grow leaf mold like it's your job to get my kid all sick and snotty.  Thanks.  Bitch.

                I shouldn't complain too loudly. I really shouldn't.  We have some crappy Novembers where Feisty Pants was in the hospital, sometimes for the whole month. I have had Thanksgiving dinner in more hospitals and Ronald McDonald Houses than I care to think about.  This a minor illness.  A simple sinus infection (FP is prone to those) due to her allergies caused by the (you guessed it) leaf mold.   It is just that I adore cold weather and now that it is finally my turn to wax rhapsodic about the outdoors, my kid has to go and get sick and now all I can obsess about is those Novembers when we were crashing in hospitals and sitting eating dinners by a sedated kid on a ventilator and worried about her and about exactly what the teens at home were up to without us to supervise.  (The only thing scarier than coming home to a wrecked house when you've been out of town while a teen was home is coming home to a spotless house when you have been out of town and a teen was home.)

                Nothing to do about it really, but give myself the old "it's just a fancy cold" pep talk  and keep on moving.  Feisty Pants only missed one day of school.  She still got to go to a party. (I wanted to keep her home but she threatened to go nuclear if she was stuck with her boring old parents one more day.  She just could not even.)  The antibiotics are kicking in so I think we shall all survive with our minds intact. If this is as bad as my November gets I will take it and be very grateful.

                But why, oh why, does it seem that all the alluring beautiful ones are just trouble waiting to happen?

November

      Oh, but it has been a lovely weekend.  Often, when you have a feisty one (or even if you don't) life gets so hectic you forget to take joy in the absence of a catastrophe.  This Halloween was awesome.  Feisty Pants went as Wednesday Addams.  Goo was a low rent Uncle Fester.  (He let us put make up on him, bless his whining little heart, and discovered he is not really a fan of wearing makeup.)   Hippie Pants was a beautiful Morticia.  And Dinkypants was totes adorbs as Pubert.  We had a blast making Jack O' lanterns and  turning tp rolls into scary eyes looming at you in the darkness.   (Take an empty tp roll, cut eyes out and insert glow stick -in the dark it looks just like eyes staring you.)  It was dark, and chilly, perfect spooky weather. The only minor incident was Dinkypants found where we had hidden the candy bowl and had a wee bit of a sugar high. (Am I mean thinking it was funny watching his mother try to corral him?) We love Halloween here.  It's the only day of the year we come close to passing as normal.  We even fun watching the live exorcism on tv on Friday, although FP was disappointed that nothing burst into flames when the priest was sprinkling the holy water.   Best of all, the night coincided with the end of daylight savings (NOW that's a demonic scourge upon humanity.) so an extra hour of sleep (cue sounds of angels singing and contented sighing.)

       But now it's November, and we have a few weeks until the Holiday Express comes roaring back with its chaos and food and crazy relatives and gift buying, making, and giving.   Not that the holidays aren't a beautiful form of chaos and love, but chaos nonetheless. A few weeks of simply raking leaves and battening down the hatches for winter.  A few weeks of quiet dark evenings and blissfully boring weekends.  Of eating up all the Halloween goodies and arguing over who is bringing the pie for Thanksgiving.  These quiet down times are what sustains anyone who has to live with incipient chaos like a disabled family member (or anything that brings  the uncertain into one's life.)  When you live life rolling with its punches, you learn that you have to savor the quiet moments when you get to just stand still for a minute in between one crisis and the next...

       And, so , we are going to enjoy the hell out of this lovely in between time.  No one is sick at the moment.  No grand death march of appointments for a few weeks.  No trying to make everybody fit in the schedule or please every crazy relative for at least a few weeks.  Just quiet blissful boring November. We will argue over football and watch tv and pretend to be normal. I will listen to my loony family dig out Christmas carols early to annoy me. Feisty Pants will have a blast nagging her father about "Kistmas Lights!!!"  I have to be honest here, Halloween is starting to feel a lot like Christmas to me.

Sliding into home

         Whew... it has a crazy couple of weeks.  First we had a buttload of appointments.  Feisty Pants has a severe scoliosis and may be having surgery after the first of the year. So there were consultations and x-rays and all day long appointments to deal with.   In another city.   On the Goo's birthday.  For which the universe gifted him 48 hours without any sleep. Then there was the flu shot parade.  The flu sucks worse than the shot so off we all go every fall. Three shots, three appointments. Not a biggie but that's three day's worth of transportation and time to arrange.  Except this time, Feisty Pants -who has fluctuating muscle tone due to her CP (read that as her muscles will loosen or tighten up almost at random) tightened her legs up at random just as she was getting the shot. So it hurt.  And she cried for the next twelve hours straight.  All the way home from the doctors.  All the way to the grocery store.  All the way home.  All the way until she fell asleep that night.  If CP were a person, I would have punched it in the face.  

        Then, because it is not crazy enough, one day last week the brakes on FP's nurse's car went out.  The universe had better NOT mess with that lady. She is amazing with my child and deserves roses and chocolates and cute boyfriends NOT bad brakes on her NEW car. Or heavens forfend, an accident. Oh and Hippie Pants did not want to be left out of the chaos, so she has some awful stomach bug and/or ebola and/or the plague. We love her but she is in exile right now and will not be out of banishment until she behaves and stops being contagious.    

            I shouldn't bitch .  I really shouldn't.  These are all minor troubles and the Bataan Death March of our last couple of weeks seems to be over.  (And it sooooo unlike me to complain, I know. I know. I'm such a saint.) It's just that when you seem to live on the raw edge of your patience and nerves, it never takes much to upset the apple cart and overwhelm you.  We sleep in shifts, are sleep deprived on the best of days, and never seem to have to time to finish the everyday stuff, let alone the crazy stuff that life hands out to us all. I do not know how anyone with two feisty kids can manage it. I have one feisty one and am usually lucky to be able to find my ass with both hands and a flashlight. But, I know the crazy won't last forever.  The hectic pace of the last couple of weeks is slowing down.  The brakes were fixed. Goo got some sleep.  Tummy bugs, like all things, will pass.  Halloween will come on the weekend, so no squeezing it in around school and therapies.  Best of all, we will be turning back the clocks soon so I will have an extra hour in my weekend. (Yay, sleep!) The first two weeks of November never looked so blissfully uneventful. Our October has been like running that last mile of a marathon or hitting a triple in the last inning of a game.  Sliding into the home plate of November has rarely looked so good. 

Restraint and Seclusion (because I cannot use swear words as a title)

      This one may be a bit hard to write.  Not that I can't prattle on about damn near anything, but because it's hard to write about this subject with resorting to swear words and banging my head off the keyboard.  Both of which actions make the spellcheck/autocorrect feature lose it's little mind.  (Last time it had to be talked down from a ledge. It doesn't appreciate the way I spell swear words and guttural shrieks.)  But I want to talk about restraint and seclusion in schools. 

       Disabled children can be stubborn.  (Ok, let's be honest they make stubborn into an art form. They have to or they wouldn't survive and thrive.)   That, along with trouble in communication, often makes for sometimes erratic and uncontrolled behavior.  Having said that.  THESE ARE CHILDREN FOR F'S SAKE. We expect children in general to behave better than adults (When is the last time you were given a time out for swearing or being cross or acting selfishly, hmm????)  We seem to expect disabled children to be passive little tiny tim's with never a bad moment or cross word for anyone.  And frankly, we are all jerks for doing so.   So why oh why do we have these god awful restraint and seclusion policies for disabled children in schools?   I can understand a meltdown is hard to deal with but guess what folks, that's why we adults have all the power and money and cooler toys and no bedtimes.  We deal with the hard stuff.  I could possibly see removing a child until the meltdown is over (which by the way is NOT a temper tantrum, learn the difference or just shut up already.  You're not cool and adult when you spout mean nonsense.  You're just mean, Madame Umbridge, so pipe down.)  Disabled children are more often punished and more harshly punished than their more typical peers for the SAME infractions.  It's not about them.  It's about we adults being cruel.  So to that end New York State is investigating the use of restraint and seclusion in schools.  The following is from my local Independent Living Center's  newsletter. Much thanks to STIC for the permission to use! 

       From AccessAbility, the newsletter of the Southern Tier Independence Center :

Disability Rights New York, the official New York State Protection and Advocacy Agency for people with disabilities is investigating inappropriate use of restraints or time out rooms in schools across the state. They are seeking information on recent cases: those that occurred during the previous school year or earlier this fall. 

    If you report a case DRNY, they will help you to decide "next steps which may include accessing the school and student records or filing a complaint with NYSED, or a range of other options"  They will protect your identity if that's what you want.

     Julie Keegan, Surpervising Attorney for the developmental disabilities P&A program at DRNY, said, " Assessing what's happening or not happening in actual cases provides an important context for the survey information we collected last fall (we had over 300 responses!). I would really appreciate you help in this effort. It will make a big difference in this very problematic area of behavior invention."

Contact Julie at:

(518)432-7861 voice

(518)512-3448 TTY

(800) 993-8982 toll free

(518) 427-6561 FAX

Julie.Keegan@disabilityrightsny.org

YAY! October!

          So, yay, it's October!  And it is starting to get chilly!  And all the 'pooky shows are back to keep Feisty Pants happy. And she has decided on a relatively easy Halloween costume that won't kill us trying to make or buy. (Don't ask, it's a secret for now she says.)  So you'll have to excuse me while I snort a few lines of apple pie and pumpkin spice while digging out my ugly comfy boots and yummy sweaters and flannels.  The whole world feels like a comforting cup of chai tea right now.  As the lovely writer once put it, "I'm so glad I live in a world where there are Octobers."  And Feisty Pants isn't even too sick yet, in spite of the leaf mold beginning to burgeon and the goldenrod blooming across the street from our house.  The kids have been back to school long enough to trade germs. She has a sinus infection, but that's nothing for fall.  So the fact that FP has a minor infection and is on antibiotics really isn't that big of deal.

        So, in order to celebrate, here are some fun, octoberish things to do to while away a fun chilly spooky evening.

1) Pumpkin Stencils- what Halloween is complete without a jack'o'lantern or three or a dozen?  Here are some great sites to find a stencil.  If your kids are too little or just not able to carve, use the stencils as a paint/marker stencil.  You can even break out the old Mr. Potatohead toy and use the parts to decorate.  OH and by the way, have you guys seen the teal pumpkins yet?  Pumpkins painted teal and placed with your other jack'o'lanterns are meant to symbolize that people inside have some non-food type treats for little kids with sensory issues or food allergies.  Seems like a cool way to signal inclusion.

200+ pumpkin stencils

Better Homes and Gardens pumpkin stencils

 

Alternatively, you can just google the phrase"images + pumpkin stencils" and print whatever suits your fancy.

 

2) Fun fall crafts:  This site has loads of cute, fun craft ideas for kids.  Best of all, they are cheap and cheerful.  Have at it and have fun.

Free Kid's Fall Crafts

So there you go.:) I hope to follow this up with some fun Halloween treats but if this month stays this fabulous, we'll probably be in the backyard monkeying around with leaves, so no promises.  Happy Autumn!!! 

Why she was wearing that stethoscope

        So I wanted to address the controversy about what the two co-hosts on the view said about nurses. It's a day late and a dollar short, I know, but what do I do that isn't.  To be fair, I suspect the women didn't have a lot of experience with nurses and what they do all day. I also suspect they simply take turns on that show saying crazy things in the name of ratings.  ('"Look, aren't we all just opinionated and fearless here, or what?")  My guess is they draw straws or mascara wands or some such and short stick has to say something asinine.

         But, in order to help allay their oh so obvious ignorance of what nurses do all day. (FFS they referred to scrubs as a "costume" and did not realize nurses, along with respiratory techs and cnas, also wear stethoscopes.  Hell, I have two sets just for Feisty Pants.) I thought I would point out some very large and important differences between nurses and doctors. So here are just a few of them right off the top of my head:

1) Doctors get all the credit- Nurses do all the work.   This is not a slam against doctors. They are overworked and spend a lot of time poring over charts, writing orders, and trying to give and guide the best medical care they can.  But make no mistake, it is NURSES who get off their butts and give that care.  They spend all day with their patients, most of it on their feet. They see the results of the meds and treatments long before the doctors do.  As a result, they always make better diagnosticians than doctors do.   ALWAYS- and the good docs know this. If you are ever at a hospital that does not give nurses the respect they deserve- run don't walk to the nearest exit.  You are not getting quality care.

2)  Nurses tend to be more empathetic.  Doctors try and care but spend all day looking for the anomaly (medicine is a science of averages) and reading the charts.  Nurses, by spending more time with each patient, get to know them as human beings.  And nurses, like therapists and respiratory techs, are focused on maximizing care and potential. That may seem like a small difference but it is an amazing difference in healing as both a science and an art.  Docs are not going to hold your hair and help you get cleaned up if you are throwing up in reaction to the anesthesia.  Or bring you coffee because they know you have been up all night with your sick kid. The doc may have sympathy but the nurses get shit done. 

3) I have only ever had a nurse say anything rude to me once.  Many years ago.  And another nurse stepped in to fix that before it got out of hand. Doctors say stupid crap all the time. ALL. THE. TIME. I have a running list.  I am surprised I have never smacked a doctor. I have never had a nurse ask me if "anyone is really in there?" in reference to FP's personality or intelligence.  Never asked me if I would rather withhold care if she ever needed intubated (IN FRONT OF HER NO LESS).  Never tried to bully me for telling them no.  Once a doctor said this to me, "Gee, you seem to know your stuff medically with this kid. Ever think of being a nurse?" I said, "No, you could not pay me enough to kiss doctor's butts all day long."  (It was a hospital where they did not treat their nurses well)  After the doc left the room, the nurse high fived me.

4) Nurses save doctor's butts all the time.  I cannot tell you how many times I have heard a nurse nicely say "but Doctor, this patient is allergic to this medication."  Or " doctor, do you think I should I ask  a respiratory tech to come take a listen to this patient breathe?" Or "doctor did you want me to (insert procedure said nurse knows full well needs to be done but doc hasn't thought of it yet)"   This is the nurse gently saving the doctor from making what could be a large mistake.  And a good doctor damn well knows it.

             Listen, none of this is meant as disrespect towards docs.  They perform great work and are vital to society.  But when the zombies rise, I want some nurses and cnas and therapists on my team, that way I KNOW we will all survive.

A Taste of Fall

               So Feisty Pants missed another party today.  My nephew's daughter turned one .  Feisty Pants is either nursing a mild cold or a nasty allergy attack.  No fever but icky things are running out of her nose.   If it's a cold, we didn't want to give it to everyone else. If it's allergies, we didn't want everyone else's germs to turn FP's sniffles into something worse. If it's ectoplasm, she is a gifted psychic medium and then obviously movie style hi jinks would ensue at any gathering. Which means another day without cake and stuck with her evil parents.  She is understandably thrilled.  Thank goodness for the Dr. Who marathon.   That is the only thing that has kept her from firing us squares and blowing this popsicle stand of dullness.  Well, that and cooking which is had kept her at least mildly entertained.  Feisty Pants sees cooking as one big fun science experiment and she is kind of a science geek.

                So to that end, here are a couple of fun fall themed recipes we tried out today.  They kept FP chuckling and happy I think because they gave her a sense of accomplishment and not because she slipped the poison in when we were not looking. Meh, either way they are tasty. Enjoy!

Apple Ham Paninis- 

You will need:  One loaf French or Italian Bread, thinly sliced apples (macs or granny smith), sliced deli ham, sliced cheddar, sliced onions (optional), honey mustard dressing

Slice the bread in half length wise. Spread thinly with dressing.  Layer on apples, ham, cheese, onion.  Toast in panini press.  (If you don't have one just use a foreman grill or use a griddle and weigh down with a bacon press.)  Serves four with a salad or two if one of you is Goo.

Crockpot Cider-

 This one is great for a party.  And it makes you house smell amazing!!! (Beats cleaning.) You could cut it down and do this in a small pot on the stove if you like.  Just simmer it on low.

You will need: 1 gallon apple cider.  1 TBS. Vanilla.  1/2 cup honey OR 1/2 cup sugar.  1 TBS allspice. 2 TBS cinnamon.  1 can pumpkin puree (optional)

Throw everything in the crockpot and simmer until the house smells like autumn in heaven.

Fried Apples-

You will need: Five or six apples, half stick of butter, half cup brown sugar, loads of cinnamon.  (calorie counting is for squares)

Core and chop the apples into chunks.  Melt butter in frying pan.  Toss in apples, sugar, cinnamon.  Cook on medium, Stir a lot.  When apples have softened and sauce is starting to thicken, it's done.  Put on anything and everything. (I suggest ice cream or pancakes) Enjoy.   

To whom it may concern

         Well, it's been almost two weeks since I've posted.  First we have been crazy busy trying to fit in a gazillion appointments before school started.  Then the computer died so we were sans  proper interwebs for the week.  But now we are back up and humming along and school started today so my excuses for procrastination are now null and void.  It's probably actually a good thing I did not blog earlier because the last appointment pissed me off to no end.  This pause has forced to think about what I really want to say instead of just telling a certain doctor  to eat a bag of dicks.  (I should ask you to pardon my nsf your w language. But I am not sorry.)  So instead, what I am going to do is make a list of things I wish people would do when encountering Feisty Pants. 

So to that end: 

 

Dear teachers, educators, and school personnel:   For the most part, you guys are without a doubt the good guys.  You have been amazing and dedicated and awesome. But a couple of things.  One, don't think my disorganization is a sign of uncaring.  Feisty Pants has parents who have ADD and are sleep deprived, we forget and/or lose everything.   If its's important, write it down and e-mail us.  That way we won't forget.  Also, Feisty Pants is a genius at making people think she cannot do much.  Especially mentally.  Never forget that this is a kid who can get out of  a car seat in 2 minutes flat and escaped a wheelchair whilst belted in in the time it took me to cross an intersection.  She also invents funny insults for family members.  Humor is a sign of intelligence.  Obnoxious, snarky humor even more so.  Oh, and a special note to administrators.  I get you don't see her as much as the people who spend all day with her so you don't see her in all her glory, but trust me this girl is COLLEGE BOUND.    If we can do this in a spirit of cooperation and harmony, great.  If we have to do it with me dragging everybody kicking and screaming along our path, I am completely ok with that.  Respect her education or listen to me bitch ad infinitum.  Either way works for me.

Dear medical personnel:   Again, for the most part you guys are pretty awesome too.  But when you suck, you really suck.  I appreciate that Feisty Pants stymies most of you.  You spend ten to twelve years of life working your butts off only to be presented with the living conundrum that is Feisty Pants.  She gets sick when she shouldn't, sails through problems that should equal ICU stays, and in general causes you to lose sleep and sometimes hairlines.  It doesn't help that FP sees you all as the enemy and at best, ignores you and pretends you don't exist in the hope that you will be insulted and go away.  But she is not just a medical puzzle or cautionary tale.  She is a living, breathing, FEELING intelligent little girl.  You need to remember that.  And, frankly, I am NOT NOT NOT interested in your fears.  Don't give me dire predictions to "make me see how serious it is".   I ALWAYS take her health care seriously.  I just don't freak out easily.   And I lose respect for you when you do.  Also, tell all your medical brethren that the next moron who says a dire prediction in FRONT of the 12 year old girl, or in fact, talks as if she is not there in the room with you at all, is getting one of two things.  I will either smack you one or mail you a bag of phallic shaped gummies with a note that says eat this.  (depends on whether I have bail funds at the moment..)  You have been warned.

In which Feisty Pants is bored bored bored

                 Well now, we are well into our longer summer break.  Three weeks this year instead of two, and Feisty Pants is kind of done with it.  Sunshine is boring.  Rain is boring.  TV has gotten boring.  (Not enough spooky yet.)  Walks are now boring.  Goo is very boring.  I am the avatar of boring.  Hippie Pants works all the time so she is really boring.  And Dinky Pants just chases Cheweverything Pants around and that has gotten boring too. The only thing that is not yet boring are old videos from the eighties.  Apparently, the Beastie Boys are awesome.  And I am a liar liar pants on fire when I say I was a fan of them when I was a teen because I have never ever been that interesting. EVER.  Who am I trying to kid here?  I was born old and boring and  Feisty Pants is not fooled one bit by my lying shenanigans.
                    So, in order to try desperately to entertain the littlest rebel in the house I am back to scouring the interwebs for something educational and fun in order to provide at least enough brain stim to keep her from singing opera at three am. I have gotten desperate enough to let her sing but until you have heard a kid  with CP sing on both the exhale AND the inhale you have not really understood opera. The neighbors don't seem to understand opera at all at three am and want to know why we are strangling cats.  It gets a wee bit awkward.  To that end, here are three new activities I hope help to keep your feisty ones from breaking into arias in the wee hours of the morning.

1) Pumpkin cake (SUPER EASY)- this one has been making the rounds of FB as of late.  It looked easy so we tried it.  Feisty Pants gives it two thumbs up.

You will need- cake mix (yellow is probably better), 15 oz can of pumpkin.  That's it. 
     1) Mix the pumpkin into the cake mix  . Batter will be thick. 
     2) Spread in a greased  9x12 cake pan. Bake at 350 for about 35 minutes. 
     We sprinkled cinnamon and allspice on top because pumpkin SPICE dammit.  You might want a frosting.  (We didn't bother.)   

2) Bubble blowers- you will need some plastic soda  or water bottles, duct tape , stickers (optional), a large dish or pie tin, bubble liquid.  

     1) Have a grown up cut a straight line cut about halfway down the water bottle.  You are basically cutting the bottom half of the bottle off. (recycle or reuse the bottoms but keep the tops) 
     2) Wrap a piece of duct tape around the edge of the cut so it is not sharp.  The, kids can then decorate the bottle more duct tape or stickers or what have you.
     3)Pour bubble liquid in the dish.  Place the large opening into the liquid.  The kids can blow bubbles by blowing on the spout.  Repeat as necessary until fun ensues.

 3) Carbon dioxide balloons- you will need balloons, water/soda bottles, an ounce of water per bottle, a tsp of baking soda per bottle, lemon juice (or vinegar) and a straw. 

     1) Stretch the balloons out so they will inflate easier.  
     2) Add the water to the empty bottle, add the baking soda and stir with straw until dissolved. 
     3) Add lemon juice (or vinegar) and quickly cap bottle with balloon.           

Special Hot Dogs

                       Feisty Pants woke up around six thirty this morning. Not that unusual for her.  She is much more of a morning person than I ever will be.  I blame her father.  Left to his own devices, Goo would be an early riser too.  Hippie Pants and I are more "children of the night" types.  But I digress.  This isn't about what weirdos Goo and Feisty Pants are (and you cheerful early birds are, indeed, weirdos).   This about what Feisty Pants said to her father at the crack of "what the hell time is it?" and it's implications.
                       Feisty Pants woke with her usual call of "giggle...giggle. GOOOOOO..giggle giggle"  There is just something odd about people who wake up giggling.  It is not normal.  Normal people wake up saying "Crap. I'm awake. "   Feisty Pants uses cheerfulness as a way to rebel, I swear.  Anyway, so her father goes to her to get her dressed and her day started.  He asks casually, "What do want to wear?"  She answers, "Summting warm because I'm a special hot dog."  "You are a special hot dog?"  "Yes ! giggle giggle giggle..."  So they decided on PJ pants and a t-shirt.  While dressing her, he said, "So exactly HOW are you a special hot dog?"  (wait for it...)  Feisty Pants looked him dead in the eye and says, "Because I'm CHILLY!!!!!" and then laughed so hard she almost had to be suctioned.
                      I did not find this all that unusual.  Feisty Pants is a big bottle of awesome sauce with an obnoxiously cheerful, quirky sense of humor.  And she has made up jokes before.  She once told her class that her sister was adopted and she knew it because her sister was a freak .  But today was the first time I was struck by the implications of it. You see, Feisty Pants has VERY garbled speech.  And her face is not all that emotive.  Both characteristics are caused by the CP.  Sometimes, it takes her a LOOOOONNNNGGG  time to get control of her body and make it do what she wants, like gesture or sign or speak.  Again, CP.  Unfortunately, human beings don't realize how quickly we communicate.  So when she doesn't answer right away, people move on and assume she CANNOT do it or she is not in there or she simply is cognitively incapacitated.  BTW, I have noticed that the more intelligent the individual is, the more  likely they will assume Feisty Pants is not smart.  It's like they assume everyone will communicate as quickly as they can. It's so frustrating to have to explain to a seemingly well educated person, like, say, a doctor, that she is indeed in there. Especially the second time I have to do it.
                     I am reminded of a story told by the parent (whose name I cannot remember) of a son with CP who said he was told his son was not cognitively intact when the dad knew he was.  He finally took his son to a group of scientists at a college looking for a way to help him communicate.  (This was years ago before good alternative com devices were around.)  The scientists said, "How do we know he is in there?"  The father said, "Tell him a joke."    They did.  The son laughed.  The scientists helped build him a device.  So humor is absolutely a sign of intelligence. 
                    So today, my "neurologically devastated"  daughter "who will never do much"  (actual quotes from doctors who should know better) made up a corny joke to tell us.  And I feel like a million bucks.  Or a special hot dog.  And the doubters can all go suck it.        

Magic Moments

             So, today I did not get to go to a wedding.  I also didn't get to go to a memorial service.  And although they probably both involve cake somehow, the wedding was likely to be more fun.  The wedding was out because Goo had the memorial service (for his uncle) and it takes two to bring Feisty Pants anywhere.  The memorial was out because it is very hot and humid today, which means Feisty Pants is cranky and wheezing.  Since I didn't know the a/c situation at the service and there would be lots of people with all their germs (you all have cooties where Feisty Pants is concerned)  and their perfumes and deodorants and various chemicals we all carry, we decided it was best to stay exiled here in air conditioned Feistypantsland. Missing a gathering is less stressful on everybody than ending up sick because of a gathering.  Parents of feisty ones miss all sorts of gatherings due to both physical and emotional logistics.   Sometimes we miss them from simple exhaustion.   But make no mistake, we MISS them. It's not personal, I promise. Feisty Pants was not thrilled by our new assassination attempt.  (She is sure we are trying to kill by boring her to death.) However, rather than sit around feeling bored and sorry for ourselves, FP and I have decided to think about all the things we do get, that you probably never will.

              I'm not even talking about the crazy ones.  Not the bet you never saw someone do cpr on your kid ones.  Not the how many helicopters has your three year old been on ones.  (Feisty Pants used to be like a mini Vietnam vet, she would get frightened at the sound of loud lawn mowers.  We'd have to cover her ears if a helicopter went by.  She thought they were coming to take her away.  Again.)   Not even the doing the happy dance because you found a vending machine with peanut m and m's at three am ones (yay protein...) or because the soup in the hospital cafeteria was actually hot and tasty.  No, I mean the everyday things that amazing and astounding when experienced by someone who has to see the world in a much different way than you or I ever will.   One of the best parts about being a parent is experiencing the world brand new through your kid's eyes.  When the eyes belong to a feisty one (literally or figuratively) it will absolutely blow your mind.

               When Feisty Pants was about 17 months old, I took her outside in the rain.  She was amazed.  She has cortical visual impairment (her eyes work but her brain doesn't put the picture together well).  She understood water comes out a faucet but the idea of water coming out of the sky?!?  Holy Cannolis was her mind blown.  She couldn't for the life of her figure out where it was coming from.  It was magic, pure and simple. For fifteen minutes, I was a wizard and we danced in the rain.
                Or, when FP was in the NICU, the nurses would tell me when her sister had arrived on the floor the NICU was on.  NICU's are always hidden away behind locked doors and hushed hallways.  Less commotion for fragile babies that way.  Hippie Pants would arrive with her father when he got out of work.  (I went over about noon most days)  The nurses would tell me "Your daughter is getting off the elevator now."   I assumed they had cameras or something.  Turns out they didn't.  The nurses were watching FP's stats on the monitors.  Her breathing would slow but her heat rate and sat rate would rise.  All signs of being alert but calm.   The nurses said siblings did that to the babies.  Not the moms and dads, siblings.  Almost like they know their teammates.  
               I know of parents of kids with autism who talk of magic moments when the kids are happy and calm, usually concentrating on exploring the world in some minute detail.  They talk about watching their kid and being in awe of exactly how at peace they are.
              My sister, who had Down Syndrome, never met a human being she could not make a connection with or find common ground. (Hi Marc, wherever you are)  Most mornings, I cannot stand myself without three cups of coffee and a splash of holy water.
              Well, those are the magic moments we thought of to while away a boring stuck in the house afternoon.  What are your favorite magic moments with your unique visionaries?  Share in the comments.  Tell them to your friends or kids.  Go on, ask them what their moments are.  Get the conversation started.  You will learn something fun.

Avoiding Brain Drain

                         Well, while we were busy being busy, summer seems to have meandered it's steamy way  on through.  Summer school is almost over.   Feisty Pants has only a few days left of  scheming to sit next to the hot boy at school.  At least, until fall.  Which is a million miles away or three weeks depending on how you look at it.   And she has already started her preteen party session.  Last night she sang until 3:30.  AM.  As in "why do you hate Mommy and want to kill her with sleep deprivation?"  3:30 AM.   You would think she would be just exhausted today, but nope.   Feisty Pants is happily watching a movie with Goo.  Chillaxing and biding her time until it is once again time to sing us all the song of her people.  (Last night's theme was Madonna's Ray of Light.)  

                          So, I guess I'd better get off my fanny and finish looking for ideas to keep her busy for the next three weeks. Less brain stim for her means waaaaay less sleep for me and I have been informed I'm already cranky.  (A base canard if you ask me.) FP has been on a science kick lately, which I want to wholeheartedly encourage.   So these next few posts should be about whatever fun, sciency (shut up, that is too a word) things I can find.  Unless some one with medical degree steps on my last nerve or we get distracted by lightning bugs and squirrels or something.  Whatevs.  Here are the first three that seemed fun in no particular order.   

Sand Art- This one is awesome for kids with visual impairments as it stimulates sight and smell and touch.  It's a bit messy so if you're particular, do it in the yard where you can hose the kids down afterwards.
you will need: clean sand, various kool-aid packets, paper, glue, dishes. (one for each color of sand.)
1) Mix a few cups of sand with each packet of kool-aid to create the different colors. (a tiny bit of water may help.)
2) Let the kids draw (or just go straight to spreading glue) on the paper then spread the glue in a thin layer on the drawings.
3) Use the sand to "color" the pictures.

Magnet Kites- This is a great introduction to magnets.  As they play, you can explain about magnetic attraction and gravity.  (Can't remember? Google it!  Now you both have gained some brain stim.  You're welcome.)
you will need: paper, paperclips, string,  a good strong magnet, tape.
1) Cut a three inch kite shape (or two or three) out of paper.  Tape the string (about 9 inches)to one end.  Add a paper clip to the other end.
2) Tape the end of the string to a table or flat surface.
3)Use the magnet to lift the kite into the air.  Once the kite is fully extended, slowly separate the magnet from the paper clip (have the kid hold the kite at first)  The kids will be amazed when the kite continues to fly even after they let go.  And you will look  like Mr Wizard.

 Homegrown friends (stop making stoner jokes, big people.)  These are like chia pets but waaay cheaper and infinitely more charming.  These might even make cute gifts. 

you will need:  old pantyhose (knee highs would work well), potting soil, grass seed  googly eyes (or buttons) glue, and a dish or pot to hold them when finished.
1)Place a good handful of grass seed in the bottom of the pantyhose (the foot part).
2) Fill with enough dirt to make a softball-ish  sized ball.  Tie the end off.  Place in pot so seeds are on top, knot is in base of pot. 
3)Glue/pin eyes (or buttons) to make face. 
4)Water occasionally.  In few weeks this will be totes adorable.

                  Hope this helps to while away the time.  If you need us, just follow the sounds of Madonna or Voltaire or whichever melody Feisty Pants decides the world needs at three am.

 

 

Hey all, do me a favor?

                 So my friend, Lovely Pants, who is truly lovely, sent me an invite to a Facebook page organized by a mom trying to pull off a fabulous surprise for her son's sixteenth birthday.  Lovely Pants took time out of what must be a crazy week to do so by the way.  Her daughter is getting married in less than two weeks.   (I told you she was lovely.)  So, if she can make time in the middle of what must be a frenzy of last minute preparation and guests and what not, then I can surely stop bitching about everything in the medical profession long enough to do some good too.  

                 To that end, will you all do me a solid?  Please?  There is a kid named Dylan D.  living in Rochester whose mom is trying to get a birthday card drive going for him.  He is an Aspergers kid who had some problems with bullying. (Sigh.... I get kids do not  come with morals factory installed, but you think we adults would better at the after market ethics installation.)  Dylan is now home schooled but perhaps a bit lonely.  All he wanted for his birthday last year was some cards in the mail.  Which never came (He did receive a card, but not in the mail.).  So this birthday, his mom is out-classing us all and pulling out all the stops to do so.  Here's how you can help.  Please buy a card suitable for a sixteen year old boy (nothing risque please, crazy friends, you know who I am talking to.) Add a few kind words. Pop it in the mail before October 27.  (Early is ok, the mom is clever and made arrangements)  He'll be thrilled.  His mom will have a full heart. (A heart on???? Sorry, I had to.  My bad.)  You will have a lovely warm feeling worth being a little smug over.  Win for everybody. Here's the name and address. Don't worry about the last name only being an initial. His mom made arrangements for that too.  (I did say she was clever.)  And, Dylan, if you are ever seeing this, I hope your birthday turns to be as amazing as you and your mom.

                           Please send a card to:

       Dylan D.

       P.O. Box 16797
       Rochester, NY 14616

 

Howling at the Moon

           So, originally I wanted to make this about Feisty Pants' fabulous day off  (eat your heart out Ferris) wherein she went to the movies and shopping and had a blast.  (Shout out to the amazing adults who made that happen!)  Then I thought I would add a few more ideas of how to slay the beast of brain drain.  (I am still researching ideas and will come back to that, promise.)  But then I saw something that struck a nerve and now THAT is what I want this post to be about.  I saw two somethings actually, and they both pissed me off to no end.  I want to talk about the obnoxious, pervasive, hideous, soft bigotry towards the disabled.

          The first something was a post on Facebook by a family that bills itself as the Hartley Hooligans.  They are a family with two daughters with MSG and the Mom's posts are funny and awesome and bad-ass.  If you don't follow them, you should.  The latest was a post on the occasion of her eldest daughter's fourteenth birthday in which she basically told the doctor who dismissed her then infant daughter's potential and life to go suck it.  I literally applauded the post. (She couldn't hear me but so what.) What then followed in the comments was other parents of feisty ones discussing their experiences of doctors who gently said horrible, dickish things for their own good.  I even added mine.  We had reports of doctors who advised "letting nature take its course"  and "concentrate on healthy babies".  I can personally attest to "it is acceptable to turn off the life support if you wish"  and (my fave) "You need to know you are probably taking her home to die".  Oh, and let's not forget "I am sure you are ok with anything that would stunt her growth" (uhhhh, no I am not ok with that. Jerk.)   Here's a hint, dear physicians.  You think you are being careful and non-judgmental.  You are not.  THESE ARE DICK MOVES.   WHAT YOU ARE REALLY SAYING IS THAT THESE DISABLED HUMAN BEINGS ARE NOT WORTH THE EXTRA MEASURES OF EXPENSIVE CARE. If ANY human is not worth it than NO human is worth it.  How dare you say otherwise, especially when it comes to our disabled children?!?  Whom, exactly, are you saving the expensive care for, hmmmmmm?????  Someone who has something to offer other people? Why do you assume my child does not have such potential????  Who the eff are you to make that judgement anyway???  And, might I ask, why oh why would you feel the need to give us dire predictions?  Do you think we are foolish and not capable of understanding the seriousness of the situation?  Or is it just that we are not freaking out and wringing our hands so you don't think we are truly scared enough?  Must we be a voice for your fears to make YOU feel better somehow?  

             The second thing that made  me grow fangs and howl at the moon this week was some network's new show Tut.  (About Tutankhamen) I am sure it's simply a soap opera, probably riddled with typical fallacies (cue the old canard of artistic license).  But here's the thing, in the ads he looks pretty and physically perfect.  Tut wasn't.  Tut was disabled.  He had a genetic condition causing a club foot and more than likely an intellectual disability.  He had to walk with a cane.  Dozens were found in his tomb. He would have had serious back problems.  And yet he ruled.   And so did Julius Caesar, who had a seizure disorder.  Michelangelo, Isaac Newton and  (probably) Thomas Jefferson all had Aspergers.  Nicola Tesla had severe OCD.  Homer was blind.  Helen Keller was deaf and blind.  Franklin Roosevelt was paraplegic.  Lord Byron had a club foot. John Nash had schizophrenia. John Milton was blind.  Monet's fading eyesight made his paintings more unique as he aged. Beethoven wrote the Ode to Joy as he went deaf. I could do this all day but I bet you get my point.  Every single one of these people made amazing contributions to art, history, science, literature  in spite of, or even BECAUSE of their disabilities.   And yet we whitewash disability right out of our history.  WHY?  We do it because then we can look at the disabled and dismiss them with pity and fool ourselves into thinking that that is NOT prejudice.  That it's ok to not make the efforts needed educationally, medically, financially to include them in society. That we are not total dicks for doing so.   We cripple our own souls so we can not look at other people as equals because they are disabled. This is evil.  As a species, we should hang our heads in shame.

             

Staving off the beast of boredom

      Feisty Pants is off at the movies and doing some shopping. Having a blast without those annoying parents to tell her what to do, or worse, what NOT to do.  I hope she is having a great time and not doing heroin or picking up fast boys or doing tequila shots.  You never know, she went with her teacher and nurse for the outing. (A dedicated special ed teacher and a private duty nurse?  Sounds like a wild bunch to me.)  But I thought I would take advantage of the relative quiet and look up some things for her to do when the next dead zone hits.  The next one at the end of the summer session of school is three weeks this year. Usually Feisty Pants is bored stiff by the end of the fourth day.  By the end of two weeks she is certain we are trying to kill her with boredom.   Joyously, I have three weeks to fill.

                   So, to that end these next couple of posts or so will be about things you can do to hopefully entertain and provide mental stimulation to any bored kid.   I haven't managed to get these organized by age or activity this time.  Mostly because it's hot and we are all cranky.  Besides rules are for squares and mean old fart parents or so says FP.  So, eff it, here they are, in no particular order.  And if you have any better ones, show off by sharing them in the comments.  You have nothing to lose but your kid's eyerolls and whines of "but there's nothing to do."

Birdseed ornaments: You will need:a loaf of thick stale bread (think day old french bread), peanut butter, birdseed, twine. (optional: cookie cutters)

To make: Cut one inch think slices of bread. (You could be all fancy schmancy and use the cookie cutter to shape them)  Spread with peanut butter.  Sprinkle very liberally with birdseed.  Chill until firm.  Flip over and repeat on back side.  Hang with twine from trees.

Easy paper lantern- you can do these two ways, simply make the paper lantern and use as a decoration OR go all the way and make them actually light up.  You will want adult (or at least, older kids) to supervise that.

You will need: Construction paper or thick gift wrap about the same size, glue, scissors.  (Stop there if you want the really easy version) empty tuna or cat food cans (Need I say clean?) battery powered tea lights.

To make: Fold the paper in half length wise and crease.  While folded, cut slits from the center to about an inch from the edge.  Make the slits about an inch apart. Unfold paper and glue short end together, forming a tube.  Glue the bottom of  the tube to the can.  (So the can forms the bottom of the lantern)   Glue another strip of paper (1/2 inch wide by six inches long) to the top for a handle.  Drop in a tea light to light.

Summer snow- This one is messy so of course the kids will like it.

You will need: Baking soda, shaving cream. BIG bowl or bucket.

To make: Empty can of shaving cream into bowl.  Add about 2 cups of baking soda.  Stir in slowly until you get a consistency you like.  Take outside and annoy the neighborhood with snowballs.  (You're welcome neighbors! )

Back to Life

         There's an old Soul II Soul song that starts out, "Back to life, back to reality..."  It kind of sets the tone for the week.  Feisty Pants' summer session of school has started.  The therapies are back up and running.  And although we are busy, we are still getting more sleep than we did during the break.  And even though it is frigging summer (ick ick ick) and way too summery for my liking, things seem to be settling back into our school routine rather nicely.

          Feisty Pants is now sleeping better (THANK YOU THERAPY).  Complaining less of how boring and awful her parents are.  There are TWO cute boys in her class this summer.  That's not even counting her "bus boyfriend".   ('Cause when you're that adorable, that's how you roll.)  She even has plans to go see the Minions movie without her pia parents - the hallmark of a truly entertaining outing.  "'Out you, Mom, 'out YOU!"  meaning without me.  As I am the most awful, smelly albatross of a parent to ever hang around making my children's lives a misery.  (I am incorrigible that way.)  She is even showing off new verbal skills this week.   If, of course, you take a new swear word as a verbal skill.  And I am.  We did explain swear words are for speech therapists because they appreciate the effort it takes but since she only swore at her father, and she was repeating a word he had just said, I let it slide.  (Only giving her a quarter for making me laugh counts as letting it slide, right?)

          So far, the only minor hiccup was that she got sent home early on Thursday due to a power outage at her school.   Which she liked in theory.   Until she realized it meant being home with me.  She was little disappointed though, when the NYSEG guys said a transformer blew and she missed it.   I mean really, what's the point of something blowing if you don't get to watch it blow?  Feisty Pants said it was verrrrrryyyyy borrrrring.  She did not get to see anything blow up at all. Just a bunch of guys working.  They weren't even cute in her book, just old.  The summer session is supposed to be the fun one.  What the heck.  They could at least let her see something blow up.

           Ahh well, but now it's Saturday.  And she hasn't complained yet today of terminal ennui.  We even found Hocus Pocus on tv, so she is happily ensconced in witches and zombies.  (My kids due tend to skew more towards Wednesday Addams than Barbie.) So I get to have five minutes to try to finish this.  Maybe there is something to be said for simply enjoying life on a lazy July afternoon. 

The Dead Zone

            We are in the dead zone at the moment.  The regular school year is over.  Summer school doesn't start til next week. Kids who are disabled often go to school year round, Feisty Pants included. ( A great opportunity I think should be offered to most kids.)  So, since we are in the summer doldrums, we do what most other parents of feisty ones do and try to cram in all our appointments and errands and what-not into these two weeks or the other three week break at the end of summer.   To that end, today was our second trip to Syracuse this week.  A colossal waste of time, if you ask me, but the Universe did not ask.  So we crawled out of our comfy house waaay too early and went to hear one more doctor look worried and try not to say she did not have a frigging clue what to tell me. 

             Sigh, it's so frustrating.  For the doctors, for Feisty Pants, and for cranky parents who, frankly, would rather NOT be shlepping to freaking Timbuktu for no damn good reason.  I don't mind the schlepping, if it produces results.  We used to take Feisty Pants to Philly twice a year.  It took a whole week, no one got any real sleep.  (Try to imagine your entire family, sleeping and working in shifts trying to live in ONE room for a week) BUT.  It did mean that FP got the coordinated care she needed and did NOT end up in the hospital for about six months.  And then we did the trip again.  But, New York, who seems to be trying to starve the care of the disabled, will not let us take her to Philly anymore.  I am NOT kidding.  Early Intervention and specialty care are literally being slowly starved of funds.  Those involved in making the decision to do that while they trumpet New York's tax breaks  and budget surpluses on tv while claiming poverty when it comes to schools and health care for the disabled deserve a special place in hell.  And it does NOT make any good sense money wise.  It was cheaper to take her to Philly twice a year than it is to pay for ONE hospital stay.  We are now up to three or four hospital stays a year.  They are paying for four years worth of care every year to save a few cents on the dollar on an asinine fee quibble with the right place.

             The state even recognizes that Feisty Pants does not have a lot of options.  They stated that there was ONE ( a whole whopping ONE) hospital in New York state capable of handling her care.  And we tried that hospital.  They made several recommendations but insisted on a sleep study before attempting anything with FP.  Then failed to schedule said study.  Then, when we called repeatedly, apologized and said it would be scheduled.  It wasn't. Then they stopped returning our calls altogether.  They even did NOT return a call to Feisty Pants' pediatrician when he called.  (Some professional courtesy.)  I suspect, but do not know for certain, that it's because we turned down their one recommendation that would have been very lucrative to them. 

              So, now we are stuck returning to a place that does not want to admit they can't really handle her.   But knows they cannot really.  And I know they cannot really.  And we all smile and shake hands and try to muddle through best as we can.  And they grimace and say "We really cannot provide the kind of coordinated care we would like to offer her, but we are way too small."  And the state says "continuity of coordinated care would be nice, but isn't really necessary."   Right wing pundits say, "America's health care does not need changing.  We have the best health care in the world!" 

              And I say, "What the f%*# good does having any health care system do if the people who need it are not allowed anywhere near it?!?"

And the clock strikes twelve

              I was going to make this post about Feisty Pants' review of binge watching a season of Game of Thrones (which I thought be funny) but her entire view of it was summed up in, "Not enough dragons"  so no. (And don't bitch at me, she doesn't see that well so she misses most of the stuff she shouldn't see)  Then I was going to get her to review a movie or two but she summed up Captain America as "Ok, but not as pretty as Thor," and another movie as "fine until it bored me," so now I gotta come up with something else.  Perhaps I will make this post about very effing twelve years old she is. Of course, then I have to come up with spelling out the sound of her eye rolling.

              In some ways she is still just a tiny thing.  She is officially short.  (Diagnosed with "short stature" due to the cp and repeated infections which stunted her growth.)  She is rather thin.  Cp, again.  She absolutely cute and feisty which seems to add her "aren't I just a pixie" demeanor.   Her speech is garbled and her face, while beautiful, is not always expressive to an outsider.  Which again, makes her seem younger.   But she is tough as nails.  And in some ways, a little world weary.  (How many emergency helicopters have you ridden on?  How many times has an ER doctor popped a hole in your shinbone while you watched him?)  Feisty Pants even has the dark sense of humor of someone who has been there, done that, got the stitches to prove it.   And she is most certainly twelve.  Superheroes are now judged on whether they are pretty on top of super.  Side eye is now an art form.  She was seen holding hands with a boy at school.  And another boy gave her his phone number.   Which she promptly brought home and used as a reason why she needs her own facebook account. ("Not fair.  Can't talk phone.")

               So now, we are distinctly looking down the barrel of puberty, whether we like it or not.   And whether her father is ready for another teenage girl or not.  (At least, so far, this one does not slam doors)  And just to drive the point home, today she asked her father to buy her a beer.  Those people on the tv ad were dancing on a beach and they looked like they were having fun.  When told NO, she said she would simply ask someone else to do it, because summers are made for parties.  There is no finer example of  an incredible combination of naivete and too cool for the universe diva-tude as a twelve year old girl.  And now Feisty Pants has got in spades.  May the Universe have mercy on us all.

Popsiclepalooza

           Okies, people.  So I was writing about the heat.  (It is too writing and NOT whining, shut up.)  But then we were rudely interrupted by a lung infection.  And then my whining about that. But now I am done digressing.  So, since no matter how much I hope and wish, winter is not coming back for like, forever, I figured I just give in and look up some yummy popsicle recipes online.  I refuse to turn my oven on if it's over 80.  Some days it's even too hot to grill.  So how does one load healthy food into the fam without living on yogurt and salads? I could live on them but the rest of the inmates here seem to think they need something different after a few days of "but THIS salad is completely different".  

            Personally, I just resort to lying. Or more precisely, to neglecting to tell them exactly how healthy the "junk" food I have "compromised" on really is.  (Fink on me and you will all be on my list) I have no regrets either.  They think they are having a dessert for dinner.  I did not have to risk spontaneous human combustion.  These are actually pretty healthy considering we are having popsicles for a meal.  So here some yummy ideas for your "omg, it's too hot to even contemplate cooking" meal (or even just want a healthy snack.) You will need either a popsicle mold (You can find them everywhere this time of year.) or just use freezer safe cups. The trick with cups is to cover tightly with saran wrap and then poke the sticks in. The saran wrap will hold it up. (mostly)  You can  even use a pretzel rod for a stick if you don't any popsicle worthy sticks lying about.  You could also freeze them in small tupperware dishes and call it Italian ice.

              Basically what you will be doing is making a smoothie and turning it into a popsicle so if you have a better recipe than these, have at it. Or better yet, stick it in the comments and show off your smoothie cred.  The basic instructions are chop ingredients, mix in blender, pour into molds and freeze.  How many they make depends on your mold size.  By the way, if you can sneak some veggies, by all means do it.  I recommend starting with some carrot or cucumber.  Yummy, healthy and hard to detect.  I can no longer do that as someone here finked (You still suck for that GOO) and now they all watch me like hawks.

Chocolate Banana:  eight ounces greek yogurt (plain, vanilla, or banana would work), four ounces almond milk,  four medium bananas (the riper the better), 2 ounces nut butter (any) and two tbs cocoa powder.

Pina Colada: eight ounces greek yogurt (lemon, coconut or pineapple), four ounces pineapple juice or crushed pineapple, 2 ounces flaked coconut

Tropical Bliss: eight ounces greek yogurt (any flavor -I would recommend passionfruit), four ounces canned tropical fruit (or fresh, whatevs), four bananas

Apple Pie: eight ounces  vanilla greek yogurt, four chopped apples, 2 tsp raw honey, 1 tsp cinnamon.

               

And now it's raining pollen

                 So sigh, it's been a couple of weeks since I posted.   It's not due to laziness or lack of discipline, I swear. ( Seriously.  Don't listen to anything these so called people who live here say.  They are not to be trusted with their opinions at all.  Hell, they demanded to be fed daily. Like every single day.)  Actually Feisty Pants had decided to celebrate the fantastically high pollen levels around here by getting sick.  REALLY sick.  First,  she developed some sinusy, bad cold deal and was stuck at home on oxygen for a week.  Then she seemed to get better and went back to school. But she wasn't actually better.  Just plotting new and interesting ways to brew pneumonia.  So just when we thought we were all done, boom, in the hospital for a week.

                 She developed a fever Saturday morning.  So off to the doc's we went. That's a story in and of itself.  To make a long story short don't you dare act like I am the one in the wrong if don't answer your own answering service when I know you are open for urgent visits and then get all haughty when I show up and DEMAND that you see my kid. We all know that I don't have Muchausen's, Feisty Pants really is medically fragile, and frankly, the only difference between our views of my being a bitch are that I think I deserve a medal for it.  It is not my fault your answering service did not follow protocol and told me you were closed when I knew you were not. It was you or the ER and I did not think she needed the ER.  Those places are germ factories and we only go there when we have to.  We expected to be sent home with a different antibiotic and were all surprised when she was admitted.  But such is life with a feisty one.  It's always surprising in both bad and good ways.             

                But four days of IV antibiotics and three of IM antibiotics (read that as a shot in the hip) when the iv failed have put FP back on the good side of illness so we are home and back into our routine.  Back to school and therapy.  Back to being completely fed up with those boring old farts she lives with.  Mastering the art of the side eye when your annoying parents spout absolute nonsense.  Mastering the art of scoping out cute boys at school.  Discovering music that no one else has ever been cool enough to listen to no matter what they claim. (Holy Cannoli, there is a song entitled Puff the Magic DRAGON!  Who knew?) You know all the important things in life when you are twelve.

                   And here's to hoping we old farts can back to what passes for normal around here.  Catching up on cleaning and yard work that lay neglected while we were gone.  Explaining to the critters that we really are still in charge.  Catching up on sleep (please oh please oh please).  Maybe even writing a post or two.   Well, here's to hoping anyway.

 

It's the Time of the Season

              It's the time of the season for heatstroke apparently.  Or whiplash, depending on the day.  One day the overnight low is 30 and I have to cover my plants.  The next day (literally!) it's 84 and humid  and we are all dying from the heat. Next week- locusts. But don't worry, at least we will have some shade from the swarm.  So while we are all digging out our a/c's and finding where the heck our flip-flops have gotten to over the winter, I thought would write a post on heat related illness.  Trust me, heat exhaustion SUUUUUCCCCKKKSS.  You hurt and everything feels awful and you throw up a lot.  At best it is miserable.  It can be very serious.  If you are disabled or elderly, it is downright dangerous.  The best way to deal with any heat related illness is to manage to avoid it in the first place.  Keep cool.  Stay hydrated.  Stay indoors when the sun is at its hottest.  Turn the darn a/c on.  Can't do that?  Hit the nearest air conditioned public place.  Window shop at the mall. Go to the movies. Head for the public library.  Or find someplace to get wet- public (or private, if you are lucky) pools.  Splash pads at your local park.  A sprinkler in the backyard.  Water will cool you down quicker than air and is always a perfect ploy for a cranky kid (or grown up for that matter).

              But, say all that didn't work and the summer has become the kryptonite to your feisty one.  What then? First, learn to tell the difference between heat exhaustion and heatstroke. You may be able to deal with heat exhaustion at home (BUT FIRST, CALL THE DOCTOR ANYWAY).  If you suspect heatstroke, get your feisty kid's tushy to the ER stat.  (or grandma or yourself) Seriously, don't muck about.  Heatstroke can be fatal.  It really is that dangerous.

 

Symptoms of Heat Exhaustion: thirst, weakness, headache and irritability, nausea and/or vomiting, muscle cramps. increased sweating, cool/clammy skin, elevated temperature under 104 (103 in babies)

What to do: CALL the doc.  Right away.  Then hydrate and cool.  Cool baths, cool showers, get where it's cool.  Follow the doc's advice. This is even a good excuse for Hippie Pants' favorite dinner- popsicles and ice cream sundaes.  Get cool and stay cool. Tylenol for the headache.  (Which is a bitch, trust me)

IF THE ABOVE DOES NOT WORK- GET THEE TO AN ER.

 

Symptoms of heatstroke: severe headache, weakness, dizziness, lethargy, rapid shallow breathing, vomiting, flushed hot dry skin, can lose consciousness, temp over 103, possible seizures, may not sweat.

What to do: CALL 911 OR GET TO AN ER RIGHT AWAY. SERIOUSLY. HEATSTROKE IS DANGEROUS AND NEEDS IMMEDIATE MEDICAL ATTENTION.

 

So, there, now that I am done yelling at you.  Stay cool. Stay safe. Have a great summer in whatever level of Hades this heat season turns out to be.  If you get bored, swing by.  We'll invite you in for a dinner of popsicles and whatever we don't have to heat up.

 

 

 

 

 

For sale, CHEAP

          I love my kid. I truly, truly do. Forget whatever romance movie, hallmark card, valentine's day crap you learned about falling in love with your significant other/emergency contact person.  You do not know what it's like to really fall in love until you look into your child's eyes for the first time.  Feisty Pants is awesome and sly and amazing.  I even love her sister, Hippie Pants, who is funny and kind and smells good all the time. Having said that, if I don't frigging get a break from the bitching soon, I am running away from home. Or selling them at a yard sale cheap.  If you buy them both, I will throw one slightly used and dented Goo for free.

              Sigh.  So Feisty Pants is sick again. Not scarily so.  It's merely an upper respiratory infection/sinus infection/really bad cold.  She is just sick enough to be stuck at home on oxygen and antibiotics.  And mad about it. Everyone else on the entire planet is out riding their bikes.  But no, not her.  Everyone else on the entire planet is going to her cousin's most awesome birthday fete and FP has overheard her mean parents wonder if they will make it or not. Who cares if she is still on oxygen and just exactly what are they implying about a week of antibiotics and they know what that means, hmmmmmm?!?  And she is being so cooperative right now.  FP has even managed to clearly verbalize a new sentence. "I sick. Leave alone!!!"  She is even interspersing this with "Come here. Nownownownow!"  Just to show how hard she is working at communicating.  But is she getting ANY respect for all her hard work? No, just unreasonableness from those old farts. Why should she get dressed, not pull her feeding tube, not whine twelve hours straight, not sing opera at 3 am??? How dare we torture her with boredom and pants and food?!?   So what if she is sick and needs the rest, sleep is for kids who get to do things and she NEVER EVER EVER gets to do anything fun. EVER.  And her head hurts.  So please hold her.  But don't touch her because she is sick and you are all annoying right now.  Why aren't you holding her?

            Sigh, this is one of the paradoxes of disabled kids.  The determination that keeps them going through illness, disability and often pain, is the same stubbornness that makes their parents softly bang their heads against the wall.  Nothing for it really.  You just gotta learn that it is not personal, it shall too pass, soon enough,  the kid will be feeling better, happier and finding new and more exciting things to bitch about.  Until then there is always coffee, chocolate, and tequila.  On second thought, forget the tequila.  That may be part of how we ended up with these kids anyway.

Cranky Mom Blues

          So as I type this, we are sitting in the middle of a dentist's office watching Feisty Pants act as if she is being waterboarded.  She just loves the dentist. Goo is busy wrestling her into a good position where she is accessible to the dental assistants and yet cannot slug/pinch/kick them.  At least in theory. In reality, it's more akin to wrestling a squid, a squid that can bite, pinch, kick, thrash and screech.  I perform my usual oh so helpful task of guardian of the suction machine, holder of extra paper towels, and temporary office decoration.   This is a great dental office, so they will be kind and quick and not even complain when her aim is true.   And yet no matter how long it takes, it certainly feels like eons while she thrashes and shrieks.  

             I have not much to do, except sit here feeling unhelpful.  So I have time to think of all the things I wish the universe has but doesn't. Like changing tables for kids bigger than 35 pounds. (Go ahead try to change a kid in pull ups when they are 12 years not 12 months.  Bathroom floors are disgusting. I won't put my purse on one, let alone my kid.  FP passed getting changed on my lap 11 years ago.)   Toothpaste and fluoride treatments in flavors my kid likes. (They make vodka in whipped cream flavor.  Why not fluoride?   You can get latex gloves in banana flavor. Why not toothpaste?)  Mostly I sit around in moments like these and wish the medical profession as a whole researched cures instead of treatments.  I long for the day when there is either a stem cell treatment for CP or, at the very least,  a quick solution for the spasticity that contorts her muscles and limbs and makes her life painful on top of difficult.  I also wish for a roomba like coffee maker, that would follow me around and dispense lattes on command no matter where I am, kinda like a labrador crossed with a barista.  (We try to schedule appointments first or last thing so we give up less sleep.  This one is unbearably early.  I am so cranky I don't even like ME right now.)

              Really, I am just whiny.  It's a dentist appointment not an ER visit.  She is not even close to sick.  They are not hurting her.  Feisty Pants is merely pissed at the world and not afraid to let us know.  But some days just seem longer than others.  In a few hours, we will be home, done with this for at least six months and almost caught up with our daily routine.  But I do want those who don't travel down life's roads with a special needs kid to know that sometimes it is a wee bit tiring.  So, please, have a little mercy on us. Kindness doesn't cost a thing and saves us cranky parents a lot of bail money.

Mother's Day

            Since it's Mothers Day, I should be writing this about my mom or some such.  But she wouldn't see this. My parents have no computer.  My father claims to be a Luddite but I'm convinced he's mostly afraid to get one in case my mother discovers Amazon. Mom takes his word for it that she doesn't want one, although I suspect she would LOVE one and love Amazon.  In Mom's defense, she is from an area so rural that where she grew up didn't have electricity until she was about 12. (We used to tease her and tell her she was from the Waltons until she pointed out that those people had light bulbs and radios.) It's probably good that she doesn't read this. I never have to worry about her being appalled by my smart mouth or bad attitude. (Thanks, Mom!)  Besides, not having the interwebs frees up a lot of time for her to have a social life with our bazillion relatives, so she is off gallivanting about Ohio at a cousin's wedding; kissing babies, hugging relatives, giving small children large amounts of candy and then handing them back to their parents all sticky and hyper.  Generally enjoying herself.    

           But now it's Mother's day, and I should be writing some ode to moms in general about how we moms are all awesome (We are.) How we moms all work so damn hard (We do.)  How being the parent of a special needs kid is astounding and humbling and we all deserve nobel prizes and/or sainthood  for sheer ultimate mommyness. (We do) (Even there, my mother has me beat- she had four kids- my sister had Down Syndrome, my older brother has spina bifida, my younger brother was a six month preemie back in 1976.  Honestly, the woman is a bit of an over achiever.)  But, she is off for the weekend and won't read this anyway so now I am stuck for an easy topic.

           So I guess, instead of writing some ultimately self congratulating "aren't all moms AWESOME?" piece (Cue that damn lego song, or better yet, don't.) maybe I should flip the coin and write a thank to my kids.  Yes, I created you.  And yes, you two girls had damn well better appreciate that and how hard I work.  But let's face it, this journey that is our crazy family wasn't exactly your idea to begin with.  So maybe once in a while, I ought to be grateful for the two of you.  So to that end... 

            Thank you, Hippie Pants. You are amazing and kind have the most generous heart I have ever seen in a human being.  You would bring home strays when you were two (animal, human, reptile, you didn't care) and you always said the same thing.  "He's so hungry, Mommy, can we feed him?"  You stopped eating meat when you were six ("That's just MEAN.") You have such a generous spirit that you are even a good sport when your sister comes up with a clever burn. Or blames you for her crimes.  Not everyone would laugh if their sister lied all the time and said you did anything that happened that was naughty or told everybody that she knew they were adopted because their sister is such a freak.  Or laugh even harder at said kid sister's utter dismay when she finds out that (horrors!) you really are blood siblings.  Your spirit really is comprised of glitter and rainbows.  Don't let the world muddy it.  If you keep sparkling, it will shine back.

               And thank you, Feisty Pants.  Thank you teaching me that stubbornness really is a virtue.  And that defiance is an art form.  That cheerfulness and love can be the most fun way to give the Universe the finger.  That you can truly look daunting challenges right square in the eye and moon them and still look utterly adorable whilst doing so.  Your incredible joy at life and independence is contagious and gets my cranky, tired ass out of bed every morning.  I sometimes wonder with you whether I am raising Professor X or Professor Moriarty , but either way the ride will NOT be boring.  Thank you for teaching me that joy shines from within not without.

             So, thanks to you. I love you both.  Now, what did you get me???